Bill would al­low penal­ties for de­clin­ing ge­netic test­ing in work­place

Em­ploy­ers could im­pose hefty penal­ties on em­ploy­ees who de­cline to par­tic­i­pate in ge­netic test­ing as part of work­place well­ness pro­grams if a bill ap­proved by a House com­mit­tee last week be­comes law.

Em­ploy­ers, in gen­eral, don’t have that power un­der ex­ist­ing fed­eral laws that pro­tect ge­netic pri­vacy and nondis­crim­i­na­tion. But a bill passed Wed­nes­day by a House com­mit­tee would al­low em­ploy­ers to get around that if the in­for­ma­tion is col­lected as part of work­place well­ness pro­grams.

Work­place well­ness pro­grams some­times give dis­counts on health in­sur­ance to em­ploy­ees who com­plete health-risk as­sess­ments or charge more for smok­ing.

Un­der the Af­ford­able Care Act, em­ploy­ers are al­lowed to dis­count health in­sur­ance pre­mi­ums by up to 30 per­cent — and in some cases 50 per­cent — for em­ploy­ees who vol­un­tar­ily par­tic­i­pate in a well­ness pro­gram.

The bill is un­der re­view by other House com­mit­tees and still must be con­sid­ered by the Se­nate. But it has al­ready re­ceived strong crit­i­cism from many groups and House Democrats. A let­ter to the com­mit­tee from nearly 70 or­ga­ni­za­tions, in­clud­ing the Amer­i­can Academy of Pe­di­atrics, AARP and March of Dimes, said the leg­is­la­tion, if en­acted, would un­der­mine ba­sic pri­vacy pro­vi­sions of the Amer­i­cans With Dis­abil­i­ties Act and the 2008 Ge­netic In­for­ma­tion Nondis­crim­i­na­tion Act, or GINA.

Congress passed GINA to pro­hibit dis­crim­i­na­tion by health in­sur­ers and em­ploy­ers based on the in­for­ma­tion that peo­ple carry in their genes. An ex­cep­tion al­lows em­ploy­ees to pro­vide that in­for­ma­tion as part of vol­un­tary well­ness pro­grams. That means no in­cen­tives to pro­vide the in­for­ma­tion or penal­ties for not pro­vid­ing it.

The pro­posed bill would al­low em­ploy­ers to im­pose penal­ties of up to 30 per­cent of the to­tal cost of the em­ployee’s health in­sur­ance on those who choose to keep such in­for­ma­tion pri­vate. That forces em­ploy­ees to choose be­tween af­ford­able in­sur­ance and pro­tect­ing ge­netic pri­vacy, said Derek Sc­holes, di­rec­tor of sci­ence pol­icy at the Amer­i­can So­ci­ety of Hu­man Ge­net­ics, which op­poses the bill.

The av­er­age an­nual pre­mium for em­ployer-spon­sored fam­ily health cov­er­age in 2016 was $18,142, ac­cord­ing to the Kaiser Fam­ily Foun­da­tion. Un­der the bill, a well­ness pro­gram could charge em­ploy­ees an ex­tra $5,443 in an­nual pre­mi­ums if they choose not to share their ge­netic and health in­for­ma­tion.

The bill, HR 1313, was ap­proved by the House Com­mit­tee on Ed­u­ca­tion and the Work­force. A com­mit­tee state­ment said the bill pro­vides em­ploy­ers “the le­gal cer­tainty they need to of­fer em­ployee well­ness plans.” Its sup­port­ers in­clude the Amer­i­can Ben­e­fits Coun­cil, which rep­re­sents ma­jor em­ploy­ers. Ex­ist­ing laws have bur­den­some rules that jeop­ar­dize th­ese well­ness pro­grams, it said.